6 Weeks Old!!!

Jake is now officially 6 weeks old and for the most part has had a good week. He is finally growing a bit better now that he is able to get some milk through his feeding tube. He weighs a big fat 1 pound and 11 ounces which still sounds so little but when looking at him we can actually begin to see a difference. If you think about it, he has just about doubled his weight and size since he was born. And because their wasn't much to double it makes a huge difference. 

Jake's lungs are still just an uphill climb. They have stabilized since Monday which is great news but they aren't as good as what we had hoped. But the Dr's are glad that he made some improvement and they hope with each dose of the steroid he will improve more and more. The hernia's are still the other big issue. We did have the specialist come and look at them. He and Dr. Gerday still agree that it would be to risky to fix his hernias and they don't think the operation would last long; that his flesh in his tummy is still too weak and it would just tear again creating two new hernias. So for now we wait! 

Cayden and Brooke now have been able to see Jake which has been great! Brookie loves looking through the window and watching Jake. In fact we have to drag her away from it when we're there. Cayden was surprised at just how small Jake really is. He had a bit of a crash course with a doll to prepare him for all of Jake's tubes and I think it did help because he has seemed to calm down a bit when we talk about Jake. Sometimes I think Cayden is a bit too smart for his age. It really took some time to prepare Cayden for his sick little brother. He is really worried that Jake will be in a wheel chair or that he won't be able to play or talk. All we can tell him is that Jake is so strong right now and only time will tell but that everything looks good so far with his brain and body. I will be posting new pictures soon of Jake with Rory's wedding ring and a new dollar bill picture that we took. 

Thank you everyone for all the fun times this week: going out to lunch and dancing!!! It has been fun to get together with everybody!!! Thanks for your support and friendships!!! We love it!

Baby Jake Update

This is one of those days when I just am trying to be strong for everyone around me but inside I feel like I'm falling apart, and really there isn't any big explanation for it. I had just gotten off the phone with Ashley (Jake's nurse) today and I walked into the store when one person walks up to see how I'm doing and I burst into tears! I think mostly I am just exhausted. Physically, emotionally, mentally exhausted. I am trying to be in a million places and get caught up on a million things all at once and all the while stopping every 2 hours to pump. (I had this goal to make home made real nice thank you cards for all of you who have helped us out so much and as the weeks have gone by I am realizing that they are not getting done, and I feel awful about it, so I apologize for everyone who deserves a card and has not yet received one.) I don't have quality time with any of my kids, and trying to stay up to date and in contact with all the nurses and doctors at all times is extremely important so that we know what is going on, especially on days when neither of us can be there with him, but at the same token it is taking a toll on how much I can handle. And I seem to catch myself taking it out on everyone around me, especially my perfect kids that I love more than anything. I come home every week to be with and see Cayden and then I am so stressed out the whole day and have a list a mile long that I can't enjoy it at all. It's just seems worse on Jake's bad days like today.

Jake isn't having a great day. He was given some steroids last week that greatly improved his condition and everyone was real excited to see what progress he had made. Since the steroids have now wore off he has regressed back to the sick stage he was at before. For me, this has been horrible terrible news that has greatly affected my entire day. But when talking to the doctors tonight, they told me that this was not unexpected, and that they are just glad that the steroid did show them that it IS possible for Jake's lungs to improve. The problem with this steroid is that being on steroids at such a little size can cause neurological damage and also some intestinal problems. Therefore we can not give him the steroid for another week or so, and we just have to sit and wait for him to get a bit bigger and more mature. Other than that, his milk feedings were temporarily stopped to rule out any infection, or implication that the tummy was affecting the lungs, and now they have been ruled out so his feedings have continued which is always good news. He is receiving 3 ml every 3 hours. 5 ml is a teaspoon so 3 is not even close to a lot but it is better than nothing.

A good thing that happened today is that Merri Lynn showed me that I can get comments on here. I have always just had barely enough time to post a comment and then run back home to be with Brookie, I never took a second to notice that i can actually receive comments from people. I was able to sit down today and read what everyone has been writing.

You can not believe how grateful I am for everyone's support and love through this time. Support from people I don't even know but that give me hope that we can conquer this, and that we will eventually be okay. I feel like my life, that was once (for those who know me) perfectly scheduled out every single day and that I was in complete control of, has now been turned upside down on it's head and I can't control any of it. This has not been easy for me. I feel as though some days I am drowning and I have to fight to keep it together for my family. I can't even hold my little baby and he is almost 6 weeks old, and today they are telling me that the thought of holding him is even further away. I just don't know if I am strong enough for this sometimes. I know that the Lord doesn't give us any trial that we are not strong enough for, but I feel like I am needing some extra boosts. It's hard for me because I am not one to admit to defeat, so when asked how I am doing I like to put on a happy face and show that I am strong and I can get through this... but on days when Jake is sick like today, I feel so sick inside and I feel like I am mostly trying to convince myself that he will make it.

I know Jake is strong!!! Stronger than I will ever be and I know he has a reason for being here. I can't wait to see what he can do as he gets older, but for now I guess we just wait.

Jake's still just hanging out!

I wanted to put in a quick update. Jake is doing great! They are starting the process of weaning him off of his ventilator onto another less powerful ventilator which is great. He has a few weeks to go with that but at least there is progress. He is handling his feedings better now and they are actually getting bigger which is also great. He pooped two nights ago which is something I never thought I would celebrate so much in my life. I never knew how much our Intestinal system affected every other part of the body!

Jake has 2 massive hernias. So big in fact the nurses say they have never seen any get this big on a baby this small. The Dr's here at UVRMC do not perform bowel surgeries so they have been in contact with primary childrens and at this point the D's have all decided that he is too small and delicate to perform anything yet and they also think that the hernias look quite healthy as far as no kinks, or hardness. They are soft and can reduce back up into his belly quite easily. The problem that we are having with the is they hurt him when they get reduced but if they dont get reduced then gasses and poop are getting stuck down in them and it makes it harder and more uncomfortable for him to poop! Anyway, that is one of our major concerns right now.

Brookie and I are doing good! I can't thank all my wonderful friends and neighbors enough for all the love and support they have given to us. I couldn't have gone through this and mostly wouldn't be able to visit Jake without them!!! Thank you Thank you Thank you. And I love all my facebook messages that I get. Especially on rough days it is so nice to read all your comments, it reminds me that Rory and I are not alone in this.

If anyone knows of anywhere to find soft, button-up boy doll clothes let me know. Jake is to the point that as long as he doesn't have an IV in his hand he can wear a shirt, (although they look like dresses on him)!!! The poor little boy! His first room will have pink walls and his first outfit is a dress!!!

Happy First Month Birthday Jakey!!!

Happy One Month Birthday to Jake!!!

                I can’t believe a month has already gone by. When Jake was born he weighed 430 grams. He is now weighing around 680 grams, which is approximately 1 pound 7 ounces. He has had a major PDF heart surgery, 8 blood transfusions, and countless IV lines put in and out of his little body each and every day. Art lines and Pic Lines put in every extremity.  His poor little heals have been poked to death because his art lines never work. He has 2 major hernias that the doctors are becoming more and more concerned with, and they hurt every time they get pushed back into his little body. Jake has been switched back and forth from ventilators because each one fixes different problems so they have to experiment to find out which one will work the best for Jake. He has gone days and weeks without eating at a time. He has developed a Chronic Lung Disease that will be a long term problem that we will have to face as we bring him home from the hospital, meaning he will most likely be on oxygen when he comes home.

And yet with all this little guy has gone through and is going through, he doesn’t cry. (I’m sure I’m crying enough for the both of us.) He has a feeding tube and ventilators going down his throat so even if he did try to cry nothing would come out because they run right through his trachea. But he barely ever tries to cry. He just lays there in his incubator and looks around at everyone with his big blue eyes, with hope and love pouring straight out of them. I wish so badly to be able to take his place. I know I wouldn’t be as tough as he is. I would cry and scream the whole time I’m sure. We hear a lot of crying when we are in the NICU from other babies, but not from Jake. He is getting a bit stronger now and can make a mouse-like squeak, but it is never in anger or sadness like a cry, it is more of a “Hey what’s goin’ on guys!”, or like he is trying to talk to us. I’ve never even seen him open his mouth like he is crying. He yawns a lot and that is about it.

He is so strong. I could never be that strong. I was having a really hard day last Friday because I just couldn’t believe that my body had done this to him. I feel so bad and responsible that he has all these life-threatening things that can happen to him at any moment and that he was lying there suffering painlessly in his bed. Heather the nurse had to remind me that Jake doesn’t know any better. All he knows are these tubes and shots and pokes and lights and people coming and going all day. And even though his is very drugged up and they don’t think he can feel any pain, all he knows is suffering. I can’t wait till he is home and we can show him how real life is and how fun and comfortable it is. I just want to be able to hold him one day and not have to put him down after 5 seconds. I can’t wait till I can actually really touch him and hold him so I can tell him that everything is going to be okay, because at this point it is still too early to tell, he is just so fragile and little.

Jake is TINY!!!

It is really hard for everyone to really grasp how little he is. I don’t think anyone can really comprehend it unless you see it with your own eyes. Pictures just don’t do it justice at all! I’m working on some fun picture ideas but we have to be so careful about the germs that he comes in contact with so for tonight I just tried to find ways to explain his size better.

1. His hand spread open is the size of my thumb nail.

2. The widest part of his thigh is skinnier than my pinky finger.

3. Jake’s head is about the size of a tennis ball, smaller though.

The things that he has that I think look huge comparatively to his body are his fingers and his feet. He has long feet. At least they look big compared to his legs. And his fingers are so long, they look like basketball hands already. The doctors think there might be a chance that he will play sports some day. It all depends on what or how many preemie conditions he develops. I hope he can be a normal boy and play anything he wants.

His one month birthday is Today!!! and I know there isn’t really such thing as a one month birthday, but coming from a perspective that we never thought he would make it this far or have a reason to celebrate, I am going to take every birthday celebration I can get! Hopefully Jake mostly sleeps through this little birthday party, because the more sleep he gets now, the stronger his lungs and body can be for the next party we throw at his 2 month birthday party!!!! Happy Birthday Jakey-Boy!!!

How I'm I doing...?

I’m doing pretty good.

                Everyone keeps asking how I’m doing. I’m not going to lie to you all, this sucks! and is extremely hard. I am struggling with an overwhelming feeling of guilt and responsibility. I have been told by people at the hospital that what I'm feeling is normal. I know that I did nothing to cause my high blood pressure and I know that it could happen to anybody... but I also know that it is MY body that did this to him. If he was in someone else's stomach he would be just fine. So Yes I am struggling with some guilt especially on days when he isn't doing as good as today. I know that if I am not able to work it out of my system that there are people I can talk to, and I am up for that, but I also feel like I am coping pretty well considering the circumstance so I might be OK in the end. 

                I feel like I am never in the right place. I feel guilty leaving Brooklyn with friends every morning and night. But if I don’t get to the hospital to be with Jake, then I feel guilty for not being with him. And I can’t even see Cayden Tuesday through Friday, so I always feel guilty about not being with him. I think he understands why I’m here, but what if he doesn’t? What if deep down inside he feels like I have left him, or he feels that he is not as important as my other two kids. I hope when all this is over our family is able to get back to normal; which is super busy but together!

                I am feeling ok as far as my physical health. A bit tired sometimes because of all the stress, anxiety, and just the emotional roller coaster that I’m on; and it doesn’t help that I have to pump 8-9 times a day and that pumping sometimes interferes with my good night’s rest! I am happy to say that I am now off all of my medications for high blood pressure. I hope to not have to worry about high blood pressure ever again. That was scary!

So for me, I’m feeling overall good. I will have to admit Pepsi is a MUST staple in my diet right now, but the nurses have all said, “Go for it!!!”

My body is slowly getting back to normal. Normally when you have a baby you lose a bit of weight right after the birth because of the baby. Sadly when your baby is only 15 ounces, you don’t lose that much weight.  Luckily I was much better with this pregnancy and didn’t gain as much weight either. Hopefully within a couple weeks I will fit in my normal pants. It would help if I was allowed to exercise, but in all honestly, I don’t know when I would even fit that into my crazy schedule.

I do plan on dancing in the spring performance. I have been having fun with dance all year and so I have decided to set this goal to get back on stage and have fun with it! I don’t think it is healthy to completely stop living my life because of what has happened. In all honesty, I know that I need to visit Jake as much as possible, even though there really isn’t much I can do with him other than change his diaper and take his temperature. I am excited every time I get to be with him, but even the doctors told me that I need to take one day off each week to refuel my energy tank.  This is A LOT to handle and A LOT of stress comes with Jake being so little, so I think dance is a great way to relieve some of the stress and I love the music. Music has been very therapeutic the past few weeks.  So just cross your fingers that I don’t totally screw up the dances or the ladies dancing around me!

3 weeks old today

                Jake is such a cute little boy. It is hard to not fall in love with him at first sight. He has all the nurses wrapped around his tiny fingers! He is three weeks old today and while he is doing better than expected, that’s not to say that we are not very worried about things. Jake has very sick lungs right now that the doctors are being very delicate to fix. Not giving him medicine could be detrimental but the medicine to give him can also cause problems. He is also switching back and forth from different ventilators, trying to figure out which one is going to be right for each individual day. We are learning that it is a delicate balance every single day in the NICU. The doctors, nurses and parents have to weigh out all the pros and cons for every single decision made. There are things that I am learning that I wish I had never ever learned. It is amazing all of the little details that never get missed.

The nurses have been amazing through this whole process.  I can’t thank them enough for their love, attention and patience with not only Jake but me as well. It is scary as a mom to leave your baby in the nurse's care, especially in this situation; I am so thankful that the nurses have been so wonderful and attentive to all his needs. They are so smart and truly know what they’re doing. 

Jake is very little. You can easily compare him to the size of a barbie. There are only a select few amount of people who will ever witness the things that Rory and I are becoming accustomed to. Jake is a very special little boy. It is hard for me to sit in the mom room at the hospital and listen to the other moms come in crying and complaining that their 6 pound baby will have to stay one more day in the NICU! It takes all that I have not to jump up and start yelling at them. We all need to stop complaining about the little things in life and remember how blessed we all are to have healthy babies and kids, even if they have the slightest problems, or they don't do everything perfect the first time, there are worse things in the world to complain about than one measly day in the NICU.  I think that will be one of my biggest lessons learned from this experience. I know I can be and have been hard on my kids in the past, and I expect them to be ust perfect all of the time. I now am going to be more appreciative of every day I get to spend with them and not be so picky about the little things! I love my kids and Rory more than anything and I am going to try harder each day to show that love!

What a scary weekend!

Well Saturday started out like any normal Saturday, well at least normal for right now. That ended abruptly when we got to see Jake and they told us that they had found a problem. Jake was born with a hole in his heart that closed up with the help of medication right after he was born. Over the course of three days the hole had re-opened and was flooding blood throughout Jake's little body and especially throughout his lungs. Before we new it, Jake's lungs were clear filled with fluid and the best solution was immediate heart surgery. I can't tell you how scary it is to be told that your 10 inch long baby with the heart the size of a dime is going in for heart surgery. The doctors assured us that they have performed this surgery many many times but that there are always risks. They told us the risk of death, the risk of infection from the surgery and even the risk of losing Jake's vocal cord strength because of this surgery. Thankfully Rory was there with me and together we decided that we had to go with the surgery, that the risks of him losing his life without the surgery was just too high. Thank goodness my parents had gotten there to meet us for lunch and they were able to take Cayden and Brooklyn home with them for the weekend. 

The surgery started and every minute felt like a lifetime. The doctors predicted that it would take about an hour but in the end it was more like 3 hours. They said it took longer because his heart didn't form the same as other hearts had formed and they had to make sure they were clamping the right hole and not the aorta. The problem is that the nurse told us that they were worried about this while they were trying it out. I wish she would have waited until after they had figured it out rather than before. But either way it worked out, Dr. Mitchell clamped the right thing and the surgery was a success. Very scary and frightening but it was a success. 

Now we are still waiting for the lungs to clear up. His little lungs are just not strong enough to pump all the fluid out on there own and the fluid is starting to become a problem. He has now started to be on another medication that is supposed to break down the fluid and help it get out of there and we hope by Friday this has worked.

Being in Salem without Rory and Cayden is very weird and sometimes hard but we know it is best for Cayden to keep him in school and it would just be too much driving for Rory to go back and forth. I want to thank all of you who are helping us out at this time. I have always had a hard time asking for help, in fact I really don't like asking for help, but this experience it teaching me that sometimes we can't just do everything on our own, and we need the help of others. I just want everyone to know how much it means to me. Thank you!!!

His 2 Week Birthday!!!!

We’ve made it to day 14!!!

                The doctor’s told us the very first day that there would be some major up’s and down’s during the first two weeks of Jake’s life. Brain bleeds, Intestinal problems, heart stopping and lung control were the four major things that they said would highly influence the life that Jake may or might not get to have. So far I can say that the doctor’s are not only surprised at how well he has done by not getting any huge problem, but they are quite thrilled at the lack of any of these major obstacles.

Today we were told that Jake has a 95% chance of not only living --- but being quite normal as well. Going from a 5-10% chance of living to a 95% chance is a major triumph for us. We can’t believe how much our lives have changed in the span of 2 weeks. But we are proud and excited to say that Jake is doing remarkably well!!! The doctor’s think he has a long time left in the NICU (like August) but they are giving us idea’s of when he will be coming home to our family, and that is a good sign to me.